Take That Summer Vacation
Travel Tips from Moms of Children with Multiple Disabilities

by Jeanette Buttler and Martha Hack

Reprinted from the June/July 2007 issue of VISability, A Parent’s
Newsletter, published by the Visually Impaired Preschool Services (VIPS)
program in Louisville, Kentucky, <www.vips.org>. The original title is
“Take That Summer Vacation: Travel Tips for Your Special Needs Child.”

Well it’s that time of year again for the great American Summer Vacation—the
Family Road Trip. As moms of children with multiple disabilities, we are going
to share some of our travel tips with you in hopes that you will feel empowered
to set off on that family trip with your special needs child and leave some
of your fears behind.

Martha
When you have a child with multiple needs, a trip to the grocery store can be
a whole day event--you have to take oxygen, suction, pulse ox monitors, and
all kinds of other equipment that we forget the names of like “the blue thingy.”
The thought of actually going on a weekend trip or a weeklong trip doesn’t even
seem possible.

Jeanette
I think we both would agree that the primary thing you need to do is plan, plan,
and plan some more. First, you need to select your destination. The Internet
is a great resource for finding out the specifics about the location you have
chosen. My family likes to visit museums. These are usually very accessible
for wheelchairs and some even have special exhibits for the sensory impaired.
Museums are almost always air conditioned, so if you have little ones that don’t
do well in heat, these are great destinations.

Martha
When we decide where to go, I always check with the hotel about handicap accessibility
and try to get one of those rooms. It gives you a little extra space for all
the equipment. I also call the locations that we plan to visit and ask them
about wheelchair ramps and such. And I always make sure of the location of the
closest hospital to our hotel. I hope that we never have to use it, but I always
feel better knowing that I have directions to it in the glove box.

Jeanette
Once you have chosen your destination you may well want to start planning what
you will need to take on this trip. The obvious things are clothes, diapers,
food, and so forth, but with our kids that also usually means medications, feeding
tubes, feeding bags, equipment, and special foods--among other things. It is
a good idea to start a list of all the things you will need on a daily basis.
I like to think through how each day will go; it helps me remember all of the
things that I will need to accomplish each task. I, like Martha, keep most of
these items in an easy-to-carry plastic tote. We travel so regularly now that
I keep this tote stocked with staples at all times.

Plan to take extra of everything. It’s like Murphy’s Law--anything that can
break, may break. Be prepared and you won’t be stressing-out in the middle of
your vacation. My daughter, Darcy, has a trach, so many of our supplies have
to do with trachs. I make sure that I have 2 x 2’s, extra trachs, trach ties,
and all things associated with trachs in the same large ziplock bag. We even
take an extra suction container with all parts in case anything breaks. I have
also learned that if your equipment has wires, adapters, and so forth, that
can break or malfunction, then it is good to have extra of these items as well.
One time we forgot a “Christmas tree” connector for our air compressor and my
husband had to improvise. He went to a local Lowes store and found a brass nipple
that worked great. We now always keep extra Christmas tree connectors with our
supplies.

Martha
Make sure that you prepare for every possible event that could happen to your
child. I start to get JD’s stuff ready the weekend before we go; that way I
have a whole week to remember things that I might have forgotten. I use that
time to make up a “JD box.” In the JD box is everything that he could need that
you can’t buy at a Walgreen’s or Wal-Mart--suction items, gloves, an extra g-tube,
oxygen hose, breathing treatment supplies, and so forth. These all go into a
plastic box that has a nice handle and locks shut; but you could also use one
those large zipper bags. I like a locking box just in case it falls off the
cart at the hotel. It may seem like you will be taking A LOT of stuff, but I
buy sample sizes of things or use smaller empty bottles to put things in, and
that always saves room. Just think of how much you will need for the length
of your trip.

Jeanette
A lot of what I have learned has been by trial and error. I try to organize
by category, such as trach supplies, clothes, and diapers. I keep these individual
supplies in large or even extra large ziplock bags within our plastic container.
I have a group of syringes that I keep in our travel container at all times
along with extra extension tubes and small measuring cups. The medications of
course always get put in at the last minute. That is why it is good to have
a checklist.

Martha
The night before the trip I go over everything again! (This drives my husband
John nuts!) But I’d rather be sure that I have everything in that box. I also
put all JD’s things by the front door as I check them, then I know they have
been checked. Make sure you don’t forget all the power cords to equipment even
if it is battery-operated. And take extra batteries for things that you will
use also. I always plan more than I need. If we go for two days, I take stuff
for four days and, that way, if something gets spilled or broken we have back
up, especially for clothes. Preparation is the key.

Jeanette
Besides all of the supplies you will need, you’ve got to think about your child’s
needs while traveling in your vehicle. I keep all of the items that we will
need during the day while traveling in Darcy’s backpack. This includes food,
diapers, a change of clothes, sunscreen, extra humidity vents, PRN meds, and
any other little things that may be needed. It is a good idea to keep your backpack
handy for easy access. Your little one may also need to get out and stretch
occasionally, just like the rest of the family, after riding for a while. Darcy
likes her “floor time” so when we take a break at the rest stop, we take her
wheelchair out of the back of the van to make room for Darcy so she can lay
and stretch for a while. It also gives me a place to change her since at six
years of age she is getting a little long for the standard diaper-changing table.

Martha
JD’s backpack usually gets stuffed with things that we might need on the road
or at the event. Again, suction items, food, thermometer, and a change of clothes.
Then I have everything handy, and I don’t have to unload the car to get to something.
I also put in a plastic grocery bag in the backpack as this can come in handy
for many uses.

Jeanette
If your child has trouble with the heat, like my daughter does, then I have
some more ideas for you. A few years ago our family went to Disney World in
June. I was very worried about how Darcy would react in the heat. We started
planning early and were able to locate a shade for wheelchairs by contacting
the company that sold and maintained her chair. My husband then went online
and found a company called Heat Relief Depot that sells products to help beat
the heat. They had many options, and the one we chose were cooling pads. They
fit in Darcy’s chair and the best thing is they re-freeze in 20 minutes by submerging
them in ice water--no freezer required. We have found that a small soft-sided
cooler with ice works great for this and fits on the handle of her chair along
with everything else we pile on it. The last thing we did to help keep Darcy
cool was to attach a battery-operated fan with soft foam blades to the side
of her sunshade. It was flexible so we could direct it wherever Darcy needed
it. We like to say, “Darcy has it made in the shade.”

Martha
We just recently braved a trip to Indy with JD and Ryan, my five year old. While
there, we went to the Children’s Museum. I called beforehand and although they
said they were handicapped accessible, I never expected them to be as good as
they were. Every activity was one that JD could do--even dressing up in dinosaur
costumes made just for kids in wheelchairs! So make sure that you call ahead
or go online and look it up. Most places are very helpful, and no question is
a stupid question.

Jeanette
This summer my family and I had a chance to take a road trip to Washington,
D.C. This was not our first trip, and won’t be our last. In the last four years
we have made many road trips with Darcy. What we have learned is that anything
is possible if you plan. While in Washington we visited some of the Smithsonian
Museums. The great thing about these museums is that they are free. The Smithsonian
actually has many museums. Some of the ones we visited were the American History
Museum, the Natural History Museum, the National Gallery of Art, the National
Portrait Gallery, the Native American Museum, and the National Air and Space
Museum, just to name a few. All of these museums are handicap accessible and
climate controlled. I’ve also been told if you plan in advance and contact the
museums, you can have a tour guide to help your sensory impaired child explore
the museum more fully.

We always load up Darcy’s wheelchair at the start of the day with her basic
necessities: food, diapers, a change of clothes, and any meds we may need during
the day. Don’t forget sunscreen--even while walking around the city you can
get major sun exposure if you’re not careful. Washington, D.C., is very accessible
for handicapped public transportation. The city buses are all accessible as
is the Metro (the rapid transit system). We chose to walk on this trip since
our hotel was centrally located. Of course, one thing that helps us to be able
to take Darcy out and about for a long day of sightseeing are the things we
do to help keep her cool and comfortable.

We always like to dine out when we are in a new city and Washington, D.C.,
was no exception. My husband chose a lovely restaurant called Georgia Brown’s
that promised great Southern dining. It was a little more expensive than our
usual fare; but what the heck, we were on vacation. We were seated quickly and
made our choices. Just after our dinner arrived, Darcy decided she needed to
vomit. This happens to us regularly now, so we were not necessarily surprised.
Luckily the table was covered in plain white paper over the tablecloth and most
of it landed there. We were able to tear off the paper, and the table was fine.
I took Darcy to the bathroom to clean her up and used the change of clothes
we had brought along. We then returned to the table and, with everything cleaned
up, finished our meal with no further interruptions. We don’t let little things
like this stop us from going out to dinner. It was not the first time Darcy
had vomited on the table, and we’re pretty sure it will not be her last. We’ve
even been able to laugh about it on a few occasions.

Martha
On our trip to Indy, I planned JD’s clothes for four days of travel, even though
we were gone for only two days. But it turned out that JD didn’t need them--Ryan
did after throwing up in the car twice. He just wore some of JD’s extra clothes,
and it all worked out and everyone had a great time.

Jeanette
Last, I would like to touch on the subject of the “public.” Often, when we take
our special needs children out into the community, we are met with stares. We
occasionally have this happen, but mostly we think that our child has as much
right to be there as anybody else. Not all the people we see are rude. We had
a very positive encounter with a young woman on our D.C. trip. She came up to
us and started speaking, mostly signing, and asked if she could touch Darcy.
She had some kind of device (like a phone or mini computer) that she could type
text on and ask us questions. The young woman was deaf, but definitely not handicapped.
She was very nice and even offered to teach Darcy. Never have I ever had anyone
actually come up to me and say, “I would like to teach your child.” This was
wonderful. Unfortunately she lives in D.C. and we live in southern Indiana.
We did exchange e-mails and have shared experiences since our meeting in June.
It was so nice to have a positive experience out in public. One of the great
things about having a special needs child is that they allow you to meet all
sorts of wonderful people in the world that you otherwise may never have met.

I encourage all of you to get out there and travel, even if it’s just a short
weekend to get away to a town or a place close to home. It can be done, and
your whole family will have fun!